Service evaluation
Do patients and carers find separate palliative care clinic consultations acceptable? A pilot study Kate Swetenham, Jennifer Tieman, David Currow
© 2014 MA Healthcare Ltd
P
alliative care service provision is being influenced by changing policy, delivery, and funding frameworks. Services need to address these frameworks in their approaches to care delivery and planning. This report describes the rationale for, and pilot testing of, an innovative assessment clinic for community outpatients in a South Australian palliative care service. There were three core drivers for change. First, South Australia’s Statewide Services Plan— Palliative Care emphasised ‘recasting the balance of end-of-life care that takes place in the in-hospital and out-of-hospital setting to give increased opportunity for people who want to receive endof-life care at home’ (SA Health, 2009:9). Second, across Australia, specialist palliative care services are being encouraged to participate in a process of self-assessment against the 13 palliative care standards through the National Standards Assessment Program (NSAP) (Palliative Care Australia, 2012). The psychosocial needs of patients and their carers are highlighted in many of the standards, with an expectation that there are processes in place to ensure routine assessment of these needs. Self-assessment identified that in the authors’ South Australian specialist palliative care service, the focus of care was predominantly on the physical symptoms of the patient, information was provided ad hoc depending on where patients entered the service, and carers were not routinely assessed. Finally, Commonwealth Government funding through a programme to support subacute care provision enabled the appointment of a community social worker, caregiver network facilitator, and nurse practitioner candidate to the service. New and emerging roles such as the caregiver network facilitator had been identified in the Statewide Services Plan as a way to actively support informal family carers to maintain a loved one at home (SA Health, 2009). The strength of this role lies in having a dedicated staff member assisting the family carer to identify their own social and informal supports, thus building social
International Journal of Palliative Nursing 2014, Vol 20, No 6
Abstract
Background: As differing patient and carer information needs have been reported, and in light of changing health-system priorities and issues identified in a self-assessment study, a specialist palliative care service established an interdisciplinary psychosocial assessment clinic to separately assess patient and carer needs. Aim: To determine the acceptability of the separate assessment to patients and carers. Method: Patients with a high functional score and who were deemed well enough to manage an appointment were invited to attend the clinic. Consent to follow-up was obtained. Patient and carer satisfaction surveys were developed based on existing tools. Questionnaires were posted out with a pre-paid reply envelope to patients and carers. Data from completed surveys was entered into a data management system and frequency analysis completed. A secondary analysis of the comments was undertaken. Findings: The clinic was attended by 41 patients and 37 carers between September 2011 and the end of February 2012. There was a 46% response rate, with 24 questionnaires returned from both the patient and their carer, 6 from patients only, and 6 from carers only (2 of whom were bereaved). The opportunity for privacy to discuss their own fears and concerns related to the illness was appreciated by 94% of the patients and 83% of the carers. Conclusion: This initial pilot data shows patient and carer satisfaction with this clinic model. Further qualitative data would provide more information on the patient and carer experiences of the clinic. Key words: Palliative care l Psychosocial l Carer l Outpatient clinic l Communication
capital and strengthening community capacity (Greene et al, 2011). The new team members, findings from the NSAP self-assessment, and directions for care outlined in the Statewide Services Plan challenged the existing team to review the way they work. The World Health Organization (2010) policy change promoting early introduction to palliative care as best practice also challenged the existing community model of palliative care, which was itself a response to late referrals. It also highlighted the importance of family carers in enabling ongoing care in the community and that they must be supported and their needs met if they are to provide the best possible care. The
Kate Swetenham is Service Director, Southern Adelaide Palliative Care Service, and Lecturer, Flinders University, 700 Goodwood Road, Daw Park, South Australia, 5041, Australia; Jennifer Tieman is Associate Professor and Director of CareSearch, Flinders University; David Currow is Professor of Palliative and Supportive Studies, Flinders University Correspondence to: Kate Swetenham kate.swetenham@ health.sa.gov.au
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Service evaluation
302
community programme had already been recalibrated to use the ambulatory setting with the development of medical outpatient clinics, and this was then extended to nurse-led psychosocial clinics. This planning and review process informed the decision to pilot a psychosocial assessment clinic in a community setting.
Approach to clinic development
Literature review
A preliminary review of the literature was conducted using the PubMed, CINAHL, and CareSearch databases to inform the clinic style and format (Tieman et al, 2005). The purpose of the review was to identify: ●●Needs of community patients and their carers ●●Tools for use in assessment ●●Possible structures for the clinic. The search words included ‘psychosocial clinic in palliative care’, ‘psychosocial care in palliative care’, ‘caregivers in palliative care’, ‘ambulatory care’ and ‘quality of life in palliative care’. The search was limited to original literature published between 1991 and 2011. The literature review showed that patients and carers have multiple, diverse, and changing information and supportive needs that may be unique to their role. Farber et al (2003) identified that patients at the end of life and their carers had different needs. Aranda and Hayman-White (2001) found that carer anxiety was high as carers have to navigate a complex multitude of tasks at the end of the patient’s life. Kirk et al (2004) explored the information needs of patients with cancer and their family members. Of note was that information needs changed as the illness progressed. Often patients chose to know less the sicker they became, with families needing to know more as the patient neared the terminal phase. The areas identified as requiring the most information included pain management, fatigue, and home-care resources. Selman et al (2009) found that unanswered questions reduced patients’ ability to cope with their illness and carers’ ability to provide care. The literature highlighted that different approaches to clinic formats and content have been investigated. Miller and Walsh (1991) introduced a palliative care social work assessment tool for patients with advanced cancer, which was completed during an initial interdisciplinary consultation. The overall findings identified that most patients simultaneously experience multiple physical symptoms, emotional distress, financial difficulties, and home-management concerns, including concern for the impact that their illness has on other family members. Bakitas et al
(2009) conducted the first randomised controlled study to find that timely provision of education and information could improve quality of life. Studies have shown that supportive care can be overlooked and that multidisciplinary assessment may improve satisfaction and decrease symptom distress (Pituskin et al, 2010). Harrison and Watson (2011) reported on a model that partnered specialist palliative care and renal nursing teams to provide symptom management for patients with chronic kidney disease. This model empowered patients to make their own choices and supported them with advance care planning. Several studies addressed the use of screening tools in an ambulatory clinic to better identify the psychosocial needs of not just the patient but also significant family members. The Needs Assessment Tool: Progressive Disease – Cancer (NAT: PD-C) not only focuses on the needs of the patient but also provides an opportunity to explore the impact of caring on the carer (Waller et al, 2010). Evaluation of the FAMCARE-6 tool in an oncology outpatient clinic suggested that it is a suitable screening system for psychological care of oncology patients (Carter et al, 2011). Payne et al’s (2007) study indicated that a two-question screening tool could be meaningfully used to screen for depression in palliative care patients.
Clinic elements Informed by the literature review, findings from the NSAP self-assessment, and input from the clinical staff, the structure of the clinic was finalised. In setting up the clinic, the clinicians came together to break down the elements of the service’s existing multidisciplinary assessment process and identify where each element is best located and with whom. The consultation process confirmed that the focus of the clinic is on patients who are not referred to palliative care in crisis and that screening occurs across the physical, social, and emotional domains of the patient and carer illness experience. These discussions contributed to and informed the final structure and flow of the clinic. There was general agreement that if a patient has a troubling physical symptom that is not addressed first, they are less likely to explore emotional concerns. Hence, the clinic was structured to address physical concerns first, so the patient and carer start with the nurse practitioner. Together they then move on to the social worker to explore practical issues such as advance care planning that are otherwise often not addressed until late in the illness journey (Silvester et al, 2012). The patient and his/her carer are then separated to provide them with
© 2014 MA Healthcare Ltd
❛The new clinic provides the opportunity for a comprehensive combined and individual assessment of the patient and carer.❜
International Journal of Palliative Nursing 2014, Vol 20, No 6
ional Journal of Palliative Nursing. Downloaded from magonlinelibrary.com by 138.253.100.121 on December 1, 2015. For personal use only. No other uses without permission. . All rights re
Service evaluation
privacy to discuss their own experiences of the illness (Figure 1). This decision to offer separate psychosocial assessment to the patient and their carer was intended to provide an opportunity for each to raise concerns that they may not have raised had they been seen together. The team used the NAT: PD-C because of its focus on both the patient and the family carer. This validated tool is designed to assist referrers to palliative care in determining whether there is a need for the support of a specialist service. It is also intended to support specialist palliative care services in determining whether the needs of the patient require ongoing support from the programme or whether other health-care providers can offer the support needed (Waller et al, 2010).
Aim This service evaluation pilot was implemented to test the acceptability to patients and carers of separately assessing their psychosocial palliative care needs.
Methods
Ethical approval
Ethical approval was obtained from The Southern Adelaide Clinical Human Research Ethics Committee (Application number 462.11, December 2011).
© 2014 MA Healthcare Ltd
Data collection The clinic commenced in September 2011, and a patient and carer satisfaction questionnaire focusing on the acceptability of the clinic was posted out with a pre-paid reply envelope to all who attended the clinic from September 2011 to the end of February 2012. The questionnaire was developed based on existing tools from the Palliative Care Outcomes Collaborative (Currow et al, 2008a; Eagar et al, 2010) and the NSAP programme (Palliative Care Australia, 2012), with accompanying information sheets on how to complete it. It was constructed to reflect the flow of the clinic and was set out as a satisfaction tool using a scale from 0 to 10, where 0 reflects extreme dissatisfaction and 10 reflects extreme satisfaction. The tool commenced with general demographic details and then had specific questions related to the community health environment, the location of the clinic, and the ease of access. It then asked for feedback on the nurse practitioner and social worker and the session with the psycho-oncology nurse. Carers were asked to comment on their session with the carer network facilitator. Individual surveys were coded to enable patients and carers to be linked as a pair.
International Journal of Palliative Nursing 2014, Vol 20, No 6
• Nurse practitioner • Patient and carer • Physical screening
• Social worker • Patient and carer • Social and practical needs screening
• Specialist nurse (psychosocial) • Patient only • Psychological wellbeing
• Carer network facilitator • Carer only • Carer needs and wellbeing
• Multidisciplinary team review and assessment • Multidisciplinary team plan, if needed
Figure 1. Schematic representation of the clinic sessions However, the surveys were sent to patients and carers separately. Clinician feedback on the clinic activity and functioning was sought at the end of each clinic during a multidisciplinary debriefing. Details of major concerns or influences on the model were recorded.
Data analysis Completed surveys were returned to the Southern Adelaide Palliative Care Service. An administrative assistant entered the data into the Research Data Management System held on the CareSearch website (Currow et al, 2008b) for analysis. Frequency analysis of survey responses was completed by patient, by carer, and by dyad. Text responses by question were exported into an Excel spreadsheet. One of the researchers completed an analysis of comments by respondent group: patient, carer, and bereaved carer. The review identified common themes such as patient responses to the clinic structure and the environment.
Results The clinic was attended by 41 patients and 37 carers during the pilot period, of whom a total of 36 provided questionnaire responses. Details on the number of clinic attendees and survey response rates are summarised in Table 1. The dyad responses indicated that patients and carers can interpret information quite differently despite both sitting in the same clinic and hearing the same information. Often the patient felt less prepared by the service than the carer did regarding what to expect from the clinic.
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Service evaluation
am very grateful this service is available.’ (Carer 24B)
Patients
Carers
Total
Attended
41
37
78
Patient response but no carer response
6
0
6
Carer response but no patient response
0
4
4
Matched patient and carer response
12
12
24
Patient feedback
Bereaved carer response
0
2
2
Total number of responses
18
18
36
Response rate
44%
49%
46%
Comments from the patients indicated that the opportunity for privacy enabled them to explore their feelings without having to protect their carer. Patient 1A stated that having time alone ‘was very helpful, I then spoke to mum, my sister, brother and brother in law afterwards [about my wishes]’. Patient 23A found the discussion of the impact of illness on quality of life to be beneficial, stating ‘I prefer to discuss this 1:1.’ Eighty per cent of the patients and carers felt that the opportunity for privacy enabled significant conversations to take place with family members outside the clinic. The issue of where the patients wanted their end-of-life care to be provided, while confrontational for many of them, was identified as being helpful in their planning for the future.
The opportunity to spend time with the community social worker was reported as being valuable by both patients and carers, who often attend this clinic with many unanswered questions and a great need for information. Issues regarding financial support, access to superannuation, preparing a Will, and thinking about advance care planning were practical aspects about which clients appreciated receiving information. One patient stated that meeting the social worker ‘inspired confidence’. The patient went on to say ‘one has the impression that each segment was conducted by a nurse specialist in that particular field, giving freedom to discuss and confidence to act’ (patient 18A). The point of difference with this clinic is the separation of client and carer after they have undergone the physical and social work assessments. Patients are screened for any prior mental health history and their overall ability to cope with and adjust to the challenges of a life-limiting illness, whereas their carer is assessed for their willingness to care and ability to cope and manage the role of caregiving. Ninety four per cent of the patients and 83% of the carers said they had no problem with being separated for this session.
Carer feedback All but two carers said they had no problem with being separated from the patient. The two carers who said they did not like being separated did not provide any comment in the questionnaire to explain their concerns. Those carers who provided comments regarding their time away from the patient talked only of benefits. ‘I think it is good to offer it, it gave me the opportunity to share my feelings and concerns.’ (Carer 14B) ‘I felt free to highlight a couple of concerns which were minor, to a supportive and caring responsive listener ... I feel comfortable, supported and well informed. I thank you and I
304
Carer 30B stated that she benefited from privacy as her husband is ‘reserved, and he doesn’t share feelings’.
Clinician feedback When the clinicians reconciled their assessments at the end of the clinic, there were often comments that individual staff have to learn to accept that they are not the collector of all the information and have to trust that their colleagues will fill in the information gaps that they might have targeted had they undertaken a solo assessment. Clinicians reported that they appreciated the interdisciplinary assessment process and that the debrief at the end of the clinic supported their decision-making regarding the identification of risk factors, areas of high priority that need to be taken back to the wider team, and any decision to refer the patient back to their GP as not needing specialist involvement at that time.
Discussion From the clinicians’ perspectives, the clinic provides a thorough assessment and triages the patient’s level of need. In some cases this assessment identifies no pressing need and returns the client to their primary care provider for ongoing management, with recommendations and suggestions in case problems arise in the future. The clinic approach assists in identifying needs at referral and ensuring resources are being accessed appropriately. The referrals that result from this clinic include palliative medicine assessment, formal psychiatric assessment, referrals for complementary care services, access
© 2014 MA Healthcare Ltd
Table 1. Number of patients and carers who attended the clinic and the percentage who completed the surveys
International Journal of Palliative Nursing 2014, Vol 20, No 6
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Service evaluation
to volunteers, and early introduction to the community nurse if required. The results of the patient and carer survey suggest that the clinic structure offers patients and carers privacy to explore their own feelings in regard to the way they are coping and adjusting to living with a life-limiting illness. It provides a mechanism for information and support needs to be addressed that may not have been raised in the traditional clinic format. As a result of this pilot, further evaluation of the clinic is underway. This work is exploring, through a mixed-methods communication study: ●●Whether the emotional content of the patient and carer assessments differ when patients and carers are seen separately as opposed to together ●●The role of the carer when present in a clinic setting and how they contribute in the consultation ●●The communication styles of the various clinicians when discussing end-of-life issues.
Limitations The most valuable feedback from the satisfaction questionnaire was obtained from the free-text comment boxes. Future studies will explore ‘experience’ rather than ‘satisfaction’. A qualitative study using focus groups and semi-structured interviews of clinic attendees will be helpful in better understanding the net effects of the clinic. The addition of more structured feedback from referring clinicians and other members of the clinical team will also be helpful.
Conclusion
© 2014 MA Healthcare Ltd
A new model of clinic assessment was introduced as a response to changing health-system priorities and issues identified in a self-assessment study undertaken by the palliative care service. The format of the new clinic was informed by a literature review and feedback and input from the clinical team. The new clinic provides the opportunity for a comprehensive combined and individual assessment of the patient and carer. Data from the initial evaluation showed that the clinic is well received by attendees and offers the opportunity to raise and address issues that may not have been addressed in more traditional JPN clinic formats. I● Declaration of interests This work had no external sources of funding. The authors have no conflicts of interest to declare. Aranda SK, Hayman-White K (2001) Home caregivers of the person with advanced cancer: an Australian Perspective. Cancer Nurs 24(4): 300–7
International Journal of Palliative Nursing 2014, Vol 20, No 6
Bakitas M, Lyons KD, Hegel MT et al (2009) Effects of a palliative care intervention on clinical outcomes in patients with advanced cancer: the Project ENABLE II randomized controlled trial. JAMA 302(7): 741–9. doi: 10.1001/jama.2009.1198 Carter GL, Lewin TJ, Gianacas L, Clover K, Adams C (2011) Caregiver satisfaction with out-patient oncology services: utility of the FAMCARE instrument and development of the FAMCARE-6. Support Care Cancer 19(4): 565–72. doi: 10.1007/s00520-010-0858-1 Currow DC, Eagar K, Aoun S, Fildes D, Yates P, Kristjanson LJ (2008a) Is it feasible and desirable to collect voluntarily quality and outcome data nationally in palliative oncology care? J Clin Oncol 26(23): 3853–9. doi: 10.1200/JCO.2008.16.5761 Currow DC, Agar M, Tieman J, Abernethy AP (2008b) Multi-site research allows adequately powered palliative care trials; web-based data management makes it achievable today. Palliat Med 22(1): 91–2 Eagar K, Watters P, Currow DC, Aoun SM, Yates P (2010) The Australian Palliative Care Outcomes Collaboration (PCOC)--measuring the quality and outcomes of palliative care on a routine basis. Aust Health Rev 34(2): 186–92. doi: 10.1071/AH08718 Farber SJ, Egnew TR, Herman-Bertsch JL, Taylor TR, Guldin GE (2003) Issues in end-of-life care: patient, caregiver, and clinician perceptions. J Palliat Med 6(1): 19–31 Greene A, Aranda S, Tieman JJ, Fazekas B, Currow DC (2011) Can assessing caregiver needs and activating community networks improve caregiver-defined outcomes? A single-blind, quasi-experimental pilot study: community facilitator pilot. Palliat Med 26(7): 917–23 Harrison K, Watson S (2011) Palliative care in advanced kidney disease: a nurse-led joint renal and specialist palliative care clinic. Int J Palliat Nurs 17(1): 42–6 Kirk P, Kirk I, Kristjanson LJ (2004) What do patients receiving palliative care for cancer and their families want to be told? A Canadian and Australian qualitative study. BMJ 328(7452): 1343 Miller RD, Walsh TD (1991) Psychosocial aspects of palliative care in advanced cancer. J Pain Symptom Manage 6(1): 24–9 Palliative Care Australia ( 2012) National Standards Assessment Program. www.palliativecare.org.au/Standards/NSAP.aspx (accessed 29 May 2014) Payne A, Barry S, Creedon B et al (2007) Sensitivity and specificity of a two-question screening tool for depression in a specialist palliative care unit. Palliat Med 21(3): 193–8 Pituskin E, Fairchild A, Dutka J et al (2010) Multidisciplinary team contributions within a dedicated outpatient palliative radiotherapy clinic: a prospective descriptive study. Int J Radiat Oncol Biol Phys 78(2): 527–32. doi: 10.1016/j.ijrobp.2009.07.1698 SA Health (2009) Palliative Care Services Plan 2009-2016. www.health.sa.gov.au/Portals/0/palliative-careplan-2009-2016.pdf (accessed 9 January 2014) Selman L, Higginson IJ, Agupio G et al (2009) Meeting information needs of patients with incurable progressive disease and their families in South Africa and Uganda: multicentre qualitative study. BMJ 338: b1326. doi: 10.1136/bmj.b1326 Silvester W, Wallis K, Chaffers D, Whiteside K, Detering K (2012) Advance Care Planning (ACP), and its impact in the renal unit. BMJ Support Palliat Care 2: 191–2 doi:10.1136/bmjspcare-2012-000250.80 Tieman JJ, Abernethy AP, Fazekas BS, Currow DC (2005) CareSearch: finding and evaluating Australia’s missing palliative care literature. BMC Palliat Care 4: 4 Waller A, Girgis A, Lecathelinais C et al (2010) Validity, reliability and clinical feasibility of a Needs Assessment Tool for people with progressive cancer. Psychooncology 19(7): 726–33. doi: 10.1002/pon.1624 World Health Organization (2010) WHO definition of palliative care. www.who.int/cancer/palliative/definition/en/ (accessed 28 May 2014)
❛Data from the initial evaluation showed that the clinic is well received by attendees and offers the opportunity to raise and address issues that may not have been addressed in more traditional clinic formats.❜
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Do patients and carers find separate palliative care clinic consultations acceptable? A pilot study Kate Swetenham, Jennifer Tieman, David Currow
© 2014 MA Healthcare Ltd
P
alliative care service provision is being influenced by changing policy, delivery, and funding frameworks. Services need to address these frameworks in their approaches to care delivery and planning. This report describes the rationale for, and pilot testing of, an innovative assessment clinic for community outpatients in a South Australian palliative care service. There were three core drivers for change. First, South Australia’s Statewide Services Plan— Palliative Care emphasised ‘recasting the balance of end-of-life care that takes place in the in-hospital and out-of-hospital setting to give increased opportunity for people who want to receive endof-life care at home’ (SA Health, 2009:9). Second, across Australia, specialist palliative care services are being encouraged to participate in a process of self-assessment against the 13 palliative care standards through the National Standards Assessment Program (NSAP) (Palliative Care Australia, 2012). The psychosocial needs of patients and their carers are highlighted in many of the standards, with an expectation that there are processes in place to ensure routine assessment of these needs. Self-assessment identified that in the authors’ South Australian specialist palliative care service, the focus of care was predominantly on the physical symptoms of the patient, information was provided ad hoc depending on where patients entered the service, and carers were not routinely assessed. Finally, Commonwealth Government funding through a programme to support subacute care provision enabled the appointment of a community social worker, caregiver network facilitator, and nurse practitioner candidate to the service. New and emerging roles such as the caregiver network facilitator had been identified in the Statewide Services Plan as a way to actively support informal family carers to maintain a loved one at home (SA Health, 2009). The strength of this role lies in having a dedicated staff member assisting the family carer to identify their own social and informal supports, thus building social
International Journal of Palliative Nursing 2014, Vol 20, No 6
Abstract
Background: As differing patient and carer information needs have been reported, and in light of changing health-system priorities and issues identified in a self-assessment study, a specialist palliative care service established an interdisciplinary psychosocial assessment clinic to separately assess patient and carer needs. Aim: To determine the acceptability of the separate assessment to patients and carers. Method: Patients with a high functional score and who were deemed well enough to manage an appointment were invited to attend the clinic. Consent to follow-up was obtained. Patient and carer satisfaction surveys were developed based on existing tools. Questionnaires were posted out with a pre-paid reply envelope to patients and carers. Data from completed surveys was entered into a data management system and frequency analysis completed. A secondary analysis of the comments was undertaken. Findings: The clinic was attended by 41 patients and 37 carers between September 2011 and the end of February 2012. There was a 46% response rate, with 24 questionnaires returned from both the patient and their carer, 6 from patients only, and 6 from carers only (2 of whom were bereaved). The opportunity for privacy to discuss their own fears and concerns related to the illness was appreciated by 94% of the patients and 83% of the carers. Conclusion: This initial pilot data shows patient and carer satisfaction with this clinic model. Further qualitative data would provide more information on the patient and carer experiences of the clinic. Key words: Palliative care l Psychosocial l Carer l Outpatient clinic l Communication
capital and strengthening community capacity (Greene et al, 2011). The new team members, findings from the NSAP self-assessment, and directions for care outlined in the Statewide Services Plan challenged the existing team to review the way they work. The World Health Organization (2010) policy change promoting early introduction to palliative care as best practice also challenged the existing community model of palliative care, which was itself a response to late referrals. It also highlighted the importance of family carers in enabling ongoing care in the community and that they must be supported and their needs met if they are to provide the best possible care. The
Kate Swetenham is Service Director, Southern Adelaide Palliative Care Service, and Lecturer, Flinders University, 700 Goodwood Road, Daw Park, South Australia, 5041, Australia; Jennifer Tieman is Associate Professor and Director of CareSearch, Flinders University; David Currow is Professor of Palliative and Supportive Studies, Flinders University Correspondence to: Kate Swetenham kate.swetenham@ health.sa.gov.au
301
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Service evaluation
302
community programme had already been recalibrated to use the ambulatory setting with the development of medical outpatient clinics, and this was then extended to nurse-led psychosocial clinics. This planning and review process informed the decision to pilot a psychosocial assessment clinic in a community setting.
Approach to clinic development
Literature review
A preliminary review of the literature was conducted using the PubMed, CINAHL, and CareSearch databases to inform the clinic style and format (Tieman et al, 2005). The purpose of the review was to identify: ●●Needs of community patients and their carers ●●Tools for use in assessment ●●Possible structures for the clinic. The search words included ‘psychosocial clinic in palliative care’, ‘psychosocial care in palliative care’, ‘caregivers in palliative care’, ‘ambulatory care’ and ‘quality of life in palliative care’. The search was limited to original literature published between 1991 and 2011. The literature review showed that patients and carers have multiple, diverse, and changing information and supportive needs that may be unique to their role. Farber et al (2003) identified that patients at the end of life and their carers had different needs. Aranda and Hayman-White (2001) found that carer anxiety was high as carers have to navigate a complex multitude of tasks at the end of the patient’s life. Kirk et al (2004) explored the information needs of patients with cancer and their family members. Of note was that information needs changed as the illness progressed. Often patients chose to know less the sicker they became, with families needing to know more as the patient neared the terminal phase. The areas identified as requiring the most information included pain management, fatigue, and home-care resources. Selman et al (2009) found that unanswered questions reduced patients’ ability to cope with their illness and carers’ ability to provide care. The literature highlighted that different approaches to clinic formats and content have been investigated. Miller and Walsh (1991) introduced a palliative care social work assessment tool for patients with advanced cancer, which was completed during an initial interdisciplinary consultation. The overall findings identified that most patients simultaneously experience multiple physical symptoms, emotional distress, financial difficulties, and home-management concerns, including concern for the impact that their illness has on other family members. Bakitas et al
(2009) conducted the first randomised controlled study to find that timely provision of education and information could improve quality of life. Studies have shown that supportive care can be overlooked and that multidisciplinary assessment may improve satisfaction and decrease symptom distress (Pituskin et al, 2010). Harrison and Watson (2011) reported on a model that partnered specialist palliative care and renal nursing teams to provide symptom management for patients with chronic kidney disease. This model empowered patients to make their own choices and supported them with advance care planning. Several studies addressed the use of screening tools in an ambulatory clinic to better identify the psychosocial needs of not just the patient but also significant family members. The Needs Assessment Tool: Progressive Disease – Cancer (NAT: PD-C) not only focuses on the needs of the patient but also provides an opportunity to explore the impact of caring on the carer (Waller et al, 2010). Evaluation of the FAMCARE-6 tool in an oncology outpatient clinic suggested that it is a suitable screening system for psychological care of oncology patients (Carter et al, 2011). Payne et al’s (2007) study indicated that a two-question screening tool could be meaningfully used to screen for depression in palliative care patients.
Clinic elements Informed by the literature review, findings from the NSAP self-assessment, and input from the clinical staff, the structure of the clinic was finalised. In setting up the clinic, the clinicians came together to break down the elements of the service’s existing multidisciplinary assessment process and identify where each element is best located and with whom. The consultation process confirmed that the focus of the clinic is on patients who are not referred to palliative care in crisis and that screening occurs across the physical, social, and emotional domains of the patient and carer illness experience. These discussions contributed to and informed the final structure and flow of the clinic. There was general agreement that if a patient has a troubling physical symptom that is not addressed first, they are less likely to explore emotional concerns. Hence, the clinic was structured to address physical concerns first, so the patient and carer start with the nurse practitioner. Together they then move on to the social worker to explore practical issues such as advance care planning that are otherwise often not addressed until late in the illness journey (Silvester et al, 2012). The patient and his/her carer are then separated to provide them with
© 2014 MA Healthcare Ltd
❛The new clinic provides the opportunity for a comprehensive combined and individual assessment of the patient and carer.❜
International Journal of Palliative Nursing 2014, Vol 20, No 6
ional Journal of Palliative Nursing. Downloaded from magonlinelibrary.com by 138.253.100.121 on December 1, 2015. For personal use only. No other uses without permission. . All rights re
Service evaluation
privacy to discuss their own experiences of the illness (Figure 1). This decision to offer separate psychosocial assessment to the patient and their carer was intended to provide an opportunity for each to raise concerns that they may not have raised had they been seen together. The team used the NAT: PD-C because of its focus on both the patient and the family carer. This validated tool is designed to assist referrers to palliative care in determining whether there is a need for the support of a specialist service. It is also intended to support specialist palliative care services in determining whether the needs of the patient require ongoing support from the programme or whether other health-care providers can offer the support needed (Waller et al, 2010).
Aim This service evaluation pilot was implemented to test the acceptability to patients and carers of separately assessing their psychosocial palliative care needs.
Methods
Ethical approval
Ethical approval was obtained from The Southern Adelaide Clinical Human Research Ethics Committee (Application number 462.11, December 2011).
© 2014 MA Healthcare Ltd
Data collection The clinic commenced in September 2011, and a patient and carer satisfaction questionnaire focusing on the acceptability of the clinic was posted out with a pre-paid reply envelope to all who attended the clinic from September 2011 to the end of February 2012. The questionnaire was developed based on existing tools from the Palliative Care Outcomes Collaborative (Currow et al, 2008a; Eagar et al, 2010) and the NSAP programme (Palliative Care Australia, 2012), with accompanying information sheets on how to complete it. It was constructed to reflect the flow of the clinic and was set out as a satisfaction tool using a scale from 0 to 10, where 0 reflects extreme dissatisfaction and 10 reflects extreme satisfaction. The tool commenced with general demographic details and then had specific questions related to the community health environment, the location of the clinic, and the ease of access. It then asked for feedback on the nurse practitioner and social worker and the session with the psycho-oncology nurse. Carers were asked to comment on their session with the carer network facilitator. Individual surveys were coded to enable patients and carers to be linked as a pair.
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• Nurse practitioner • Patient and carer • Physical screening
• Social worker • Patient and carer • Social and practical needs screening
• Specialist nurse (psychosocial) • Patient only • Psychological wellbeing
• Carer network facilitator • Carer only • Carer needs and wellbeing
• Multidisciplinary team review and assessment • Multidisciplinary team plan, if needed
Figure 1. Schematic representation of the clinic sessions However, the surveys were sent to patients and carers separately. Clinician feedback on the clinic activity and functioning was sought at the end of each clinic during a multidisciplinary debriefing. Details of major concerns or influences on the model were recorded.
Data analysis Completed surveys were returned to the Southern Adelaide Palliative Care Service. An administrative assistant entered the data into the Research Data Management System held on the CareSearch website (Currow et al, 2008b) for analysis. Frequency analysis of survey responses was completed by patient, by carer, and by dyad. Text responses by question were exported into an Excel spreadsheet. One of the researchers completed an analysis of comments by respondent group: patient, carer, and bereaved carer. The review identified common themes such as patient responses to the clinic structure and the environment.
Results The clinic was attended by 41 patients and 37 carers during the pilot period, of whom a total of 36 provided questionnaire responses. Details on the number of clinic attendees and survey response rates are summarised in Table 1. The dyad responses indicated that patients and carers can interpret information quite differently despite both sitting in the same clinic and hearing the same information. Often the patient felt less prepared by the service than the carer did regarding what to expect from the clinic.
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Service evaluation
am very grateful this service is available.’ (Carer 24B)
Patients
Carers
Total
Attended
41
37
78
Patient response but no carer response
6
0
6
Carer response but no patient response
0
4
4
Matched patient and carer response
12
12
24
Patient feedback
Bereaved carer response
0
2
2
Total number of responses
18
18
36
Response rate
44%
49%
46%
Comments from the patients indicated that the opportunity for privacy enabled them to explore their feelings without having to protect their carer. Patient 1A stated that having time alone ‘was very helpful, I then spoke to mum, my sister, brother and brother in law afterwards [about my wishes]’. Patient 23A found the discussion of the impact of illness on quality of life to be beneficial, stating ‘I prefer to discuss this 1:1.’ Eighty per cent of the patients and carers felt that the opportunity for privacy enabled significant conversations to take place with family members outside the clinic. The issue of where the patients wanted their end-of-life care to be provided, while confrontational for many of them, was identified as being helpful in their planning for the future.
The opportunity to spend time with the community social worker was reported as being valuable by both patients and carers, who often attend this clinic with many unanswered questions and a great need for information. Issues regarding financial support, access to superannuation, preparing a Will, and thinking about advance care planning were practical aspects about which clients appreciated receiving information. One patient stated that meeting the social worker ‘inspired confidence’. The patient went on to say ‘one has the impression that each segment was conducted by a nurse specialist in that particular field, giving freedom to discuss and confidence to act’ (patient 18A). The point of difference with this clinic is the separation of client and carer after they have undergone the physical and social work assessments. Patients are screened for any prior mental health history and their overall ability to cope with and adjust to the challenges of a life-limiting illness, whereas their carer is assessed for their willingness to care and ability to cope and manage the role of caregiving. Ninety four per cent of the patients and 83% of the carers said they had no problem with being separated for this session.
Carer feedback All but two carers said they had no problem with being separated from the patient. The two carers who said they did not like being separated did not provide any comment in the questionnaire to explain their concerns. Those carers who provided comments regarding their time away from the patient talked only of benefits. ‘I think it is good to offer it, it gave me the opportunity to share my feelings and concerns.’ (Carer 14B) ‘I felt free to highlight a couple of concerns which were minor, to a supportive and caring responsive listener ... I feel comfortable, supported and well informed. I thank you and I
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Carer 30B stated that she benefited from privacy as her husband is ‘reserved, and he doesn’t share feelings’.
Clinician feedback When the clinicians reconciled their assessments at the end of the clinic, there were often comments that individual staff have to learn to accept that they are not the collector of all the information and have to trust that their colleagues will fill in the information gaps that they might have targeted had they undertaken a solo assessment. Clinicians reported that they appreciated the interdisciplinary assessment process and that the debrief at the end of the clinic supported their decision-making regarding the identification of risk factors, areas of high priority that need to be taken back to the wider team, and any decision to refer the patient back to their GP as not needing specialist involvement at that time.
Discussion From the clinicians’ perspectives, the clinic provides a thorough assessment and triages the patient’s level of need. In some cases this assessment identifies no pressing need and returns the client to their primary care provider for ongoing management, with recommendations and suggestions in case problems arise in the future. The clinic approach assists in identifying needs at referral and ensuring resources are being accessed appropriately. The referrals that result from this clinic include palliative medicine assessment, formal psychiatric assessment, referrals for complementary care services, access
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Table 1. Number of patients and carers who attended the clinic and the percentage who completed the surveys
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Service evaluation
to volunteers, and early introduction to the community nurse if required. The results of the patient and carer survey suggest that the clinic structure offers patients and carers privacy to explore their own feelings in regard to the way they are coping and adjusting to living with a life-limiting illness. It provides a mechanism for information and support needs to be addressed that may not have been raised in the traditional clinic format. As a result of this pilot, further evaluation of the clinic is underway. This work is exploring, through a mixed-methods communication study: ●●Whether the emotional content of the patient and carer assessments differ when patients and carers are seen separately as opposed to together ●●The role of the carer when present in a clinic setting and how they contribute in the consultation ●●The communication styles of the various clinicians when discussing end-of-life issues.
Limitations The most valuable feedback from the satisfaction questionnaire was obtained from the free-text comment boxes. Future studies will explore ‘experience’ rather than ‘satisfaction’. A qualitative study using focus groups and semi-structured interviews of clinic attendees will be helpful in better understanding the net effects of the clinic. The addition of more structured feedback from referring clinicians and other members of the clinical team will also be helpful.
Conclusion
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A new model of clinic assessment was introduced as a response to changing health-system priorities and issues identified in a self-assessment study undertaken by the palliative care service. The format of the new clinic was informed by a literature review and feedback and input from the clinical team. The new clinic provides the opportunity for a comprehensive combined and individual assessment of the patient and carer. Data from the initial evaluation showed that the clinic is well received by attendees and offers the opportunity to raise and address issues that may not have been addressed in more traditional JPN clinic formats. I● Declaration of interests This work had no external sources of funding. The authors have no conflicts of interest to declare. Aranda SK, Hayman-White K (2001) Home caregivers of the person with advanced cancer: an Australian Perspective. Cancer Nurs 24(4): 300–7
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Bakitas M, Lyons KD, Hegel MT et al (2009) Effects of a palliative care intervention on clinical outcomes in patients with advanced cancer: the Project ENABLE II randomized controlled trial. JAMA 302(7): 741–9. doi: 10.1001/jama.2009.1198 Carter GL, Lewin TJ, Gianacas L, Clover K, Adams C (2011) Caregiver satisfaction with out-patient oncology services: utility of the FAMCARE instrument and development of the FAMCARE-6. Support Care Cancer 19(4): 565–72. doi: 10.1007/s00520-010-0858-1 Currow DC, Eagar K, Aoun S, Fildes D, Yates P, Kristjanson LJ (2008a) Is it feasible and desirable to collect voluntarily quality and outcome data nationally in palliative oncology care? J Clin Oncol 26(23): 3853–9. doi: 10.1200/JCO.2008.16.5761 Currow DC, Agar M, Tieman J, Abernethy AP (2008b) Multi-site research allows adequately powered palliative care trials; web-based data management makes it achievable today. Palliat Med 22(1): 91–2 Eagar K, Watters P, Currow DC, Aoun SM, Yates P (2010) The Australian Palliative Care Outcomes Collaboration (PCOC)--measuring the quality and outcomes of palliative care on a routine basis. Aust Health Rev 34(2): 186–92. doi: 10.1071/AH08718 Farber SJ, Egnew TR, Herman-Bertsch JL, Taylor TR, Guldin GE (2003) Issues in end-of-life care: patient, caregiver, and clinician perceptions. J Palliat Med 6(1): 19–31 Greene A, Aranda S, Tieman JJ, Fazekas B, Currow DC (2011) Can assessing caregiver needs and activating community networks improve caregiver-defined outcomes? A single-blind, quasi-experimental pilot study: community facilitator pilot. Palliat Med 26(7): 917–23 Harrison K, Watson S (2011) Palliative care in advanced kidney disease: a nurse-led joint renal and specialist palliative care clinic. Int J Palliat Nurs 17(1): 42–6 Kirk P, Kirk I, Kristjanson LJ (2004) What do patients receiving palliative care for cancer and their families want to be told? A Canadian and Australian qualitative study. BMJ 328(7452): 1343 Miller RD, Walsh TD (1991) Psychosocial aspects of palliative care in advanced cancer. J Pain Symptom Manage 6(1): 24–9 Palliative Care Australia ( 2012) National Standards Assessment Program. www.palliativecare.org.au/Standards/NSAP.aspx (accessed 29 May 2014) Payne A, Barry S, Creedon B et al (2007) Sensitivity and specificity of a two-question screening tool for depression in a specialist palliative care unit. Palliat Med 21(3): 193–8 Pituskin E, Fairchild A, Dutka J et al (2010) Multidisciplinary team contributions within a dedicated outpatient palliative radiotherapy clinic: a prospective descriptive study. Int J Radiat Oncol Biol Phys 78(2): 527–32. doi: 10.1016/j.ijrobp.2009.07.1698 SA Health (2009) Palliative Care Services Plan 2009-2016. www.health.sa.gov.au/Portals/0/palliative-careplan-2009-2016.pdf (accessed 9 January 2014) Selman L, Higginson IJ, Agupio G et al (2009) Meeting information needs of patients with incurable progressive disease and their families in South Africa and Uganda: multicentre qualitative study. BMJ 338: b1326. doi: 10.1136/bmj.b1326 Silvester W, Wallis K, Chaffers D, Whiteside K, Detering K (2012) Advance Care Planning (ACP), and its impact in the renal unit. BMJ Support Palliat Care 2: 191–2 doi:10.1136/bmjspcare-2012-000250.80 Tieman JJ, Abernethy AP, Fazekas BS, Currow DC (2005) CareSearch: finding and evaluating Australia’s missing palliative care literature. BMC Palliat Care 4: 4 Waller A, Girgis A, Lecathelinais C et al (2010) Validity, reliability and clinical feasibility of a Needs Assessment Tool for people with progressive cancer. Psychooncology 19(7): 726–33. doi: 10.1002/pon.1624 World Health Organization (2010) WHO definition of palliative care. www.who.int/cancer/palliative/definition/en/ (accessed 28 May 2014)
❛Data from the initial evaluation showed that the clinic is well received by attendees and offers the opportunity to raise and address issues that may not have been addressed in more traditional clinic formats.❜
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